Longford woman to spearhead third Orkambi protest outside Dáil Éireann

Longford Leader

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Longford Hope for Orkambi Walk on Friday

Another protest over the delays in securing approval for new ground-breaking drug Orkambi for people with Cystic Fibrosis in Ireland will be held at the gates of Dáil Éireann tomorrow, Wedsesday April 12 at 1.15pm until 2.30pm.

This is the third Dáil Éireann protest organised spearheaded by Jillian McNulty from Longford town and it is supported by Cystic Fibrosis Ireland.

The ground-breaking drug Orkambi made by Vertex Pharmaceuticals is the first therapy to treat the underlying cause of Cystic Fibrosis in 500-plus patients here, yet after months of discussions there has been no agreement to provide it.

Jillian herself has been on Orkambi for three and a half years and it has completely transformed her life.

"I was part of the Orkambi clinical trial in Ireland and am still receiving as part of a managed access scheme. I have received a commitment that I will continue to receive Orkambi pending the outcome of discussions over reimbursement but no assurance beyond that.

"Patients, their families and Cystic Fibrosis Ireland are very much supportive of efforts to reduce the price of Orkambi and of putting in place an affordable shared-risk agreement with the Health Service Executive.

"However, people with cystic fibrosis and their families do not have the luxury of waiting an indefinite period. They are demanding a speedy and positive resolution that would see Orkambi made available now. Talks are currently ongoing with HSE and Vertex and it is an announcement expected (but not guaranteed) this week."

TDs and Senators will once again meet with organisers to show their support. A minute's silence will be held for those who have lost their lives to Cystic Fibrosis, and attendees are asked to wear purple if possible.